Hi all, let me begin by saying thank you for this community and the welcoming, supportive energy it provides.
I suffered for years with ulcerative colitis (UC)..mostly sigmoid but sometimes pan. It finally came to surgery, or should I say, I finally had come to admit surgery was the only option.
I have a supportive husband and after 3 weeks in the hospital, we are home. I had never had surgery until now, I thought I was scared prior but since having the surgery, I am deathly afraid of having it again.
Things didn't go well, the surgeons nicked my aorta, patched it - went into the recovery room and it reopened. While on the phone with my husband, to let him know the surgery was complete, the surgeon's staff screamed for him to come urgently. The surgeon hung up the phone and left my husband hanging! It was midnight, my husband raced to the hospital to only wait for hours until the second surgery was complete.
I woke up the next day in intensive care, I later found out that I was resuscitated and required 5 liters of blood. Jeebus! Thank God, I only recall being re-sedated the second time.
Like I say, I am home now and scared of needing more surgery. It has been a month since surgery, I am doing ok...emotions are now bubbling up, I have been crying a lot this week. Initially, we opted for a jpouch, so the rectum was left in. I now have excessive bleeding and cramping in my rectum. My GI suggests this is par for the course as my UC was aggressive in this location. I have researched having the rectum removed but don't love the idea either.
My husband and I don't love the idea of a jpouch for so many reasons, the least of which is the risk of surgical mistakes. I noticed in others' comments that the 'bag' becomes second nature after a while. On a good day, I am at one with the bag, but lately, I cry at the thought that this is my life. Early days...
I should also mention that I have celiac disease and lupus. The lupus is being treated and mostly not an issue. The docs still wonder if it was brought on by Remicade or if I have always had it. This is one reason why they hesitate on jpouch surgery as lupus can impede healing.
I don't have specific questions, but general worries! Any support on any one thing that I have mentioned is so appreciated.
I suffered for years with ulcerative colitis (UC)..mostly sigmoid but sometimes pan. It finally came to surgery, or should I say, I finally had come to admit surgery was the only option.
I have a supportive husband and after 3 weeks in the hospital, we are home. I had never had surgery until now, I thought I was scared prior but since having the surgery, I am deathly afraid of having it again.
Things didn't go well, the surgeons nicked my aorta, patched it - went into the recovery room and it reopened. While on the phone with my husband, to let him know the surgery was complete, the surgeon's staff screamed for him to come urgently. The surgeon hung up the phone and left my husband hanging! It was midnight, my husband raced to the hospital to only wait for hours until the second surgery was complete.
I woke up the next day in intensive care, I later found out that I was resuscitated and required 5 liters of blood. Jeebus! Thank God, I only recall being re-sedated the second time.
Like I say, I am home now and scared of needing more surgery. It has been a month since surgery, I am doing ok...emotions are now bubbling up, I have been crying a lot this week. Initially, we opted for a jpouch, so the rectum was left in. I now have excessive bleeding and cramping in my rectum. My GI suggests this is par for the course as my UC was aggressive in this location. I have researched having the rectum removed but don't love the idea either.
My husband and I don't love the idea of a jpouch for so many reasons, the least of which is the risk of surgical mistakes. I noticed in others' comments that the 'bag' becomes second nature after a while. On a good day, I am at one with the bag, but lately, I cry at the thought that this is my life. Early days...
I should also mention that I have celiac disease and lupus. The lupus is being treated and mostly not an issue. The docs still wonder if it was brought on by Remicade or if I have always had it. This is one reason why they hesitate on jpouch surgery as lupus can impede healing.
I don't have specific questions, but general worries! Any support on any one thing that I have mentioned is so appreciated.